Gluten intolerance?: Hi all, I am a 2... - Gluten Free Guerr...

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Gluten intolerance?

Curtis90 profile image
24 Replies

Hi all, I am a 27 year old male who recently went travelling in south east Asia. After 3 months I had to return home after being sure I was dying out there.

Having seen my GP I have had all the blood tests done for the relevant diseases as well as normal blood counts but nothing seems to be showing up in my results. I guess I’m just wondering whether this is something that isn’t region specific, the diet out there was very much carb/sugar based with a lot less protein intake than I would be used to back home.

My symptoms are the following: constant dizziness/vertigo(at bad times), poor balance, fluctuating headaches, blood shot eyes, tinnitus, sinus infection, palpitations, constant muscle and joint pains, hair loss and thinning on most of body as well as hair going grey too. It also might be worth mentioning all my bones make a cracking noise when I move but especially my feet and legs.

A list of blood tests I’ve had are below, thank you so much for reading my message. Hopefully someone can give me some hope as I’m in a lot of pain.

Full blood count

Blood film (foreign travel)

Malaria parasites (I was given a 10 day course of antiobiotics as some cells were showing up but the doctor said this was very much precautionary and it wasn’t malaria)

Throat swab

Full sexual health check

Calcium (Bone Profile)

B12 and Folate

Creatine Kinase

C-Reactive Protein

Electrolytes and creatinine

Ferritin

Gamma Glutamyl transferase

Liver function tests

Rheumatoid factor

TSH (Hypo/Hyperthyroid)

Uric Acid

Urea

Autoantibody Screen

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Curtis90
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Curtis90 profile image
Curtis90

Hi Orangerose, I’m not certain but I will request the results in detail and post them. When you say further checks do you mean a retest or a different test altogether?

Thank you

Peanut31 profile image
Peanut31 in reply toCurtis90

Curtis90

Further thyroid tests are:

TSH (which you say you have been tested for already)

FT4, TT4, FT3, RT3, TGAb and TPOAb.

The NHS will not normally test all those so you may have to pay for private bloods.

Medichecks and bluehorizons offer them, you can also arrange (extra charge) for a home visit where a nurse takes your blood or you can visit a hospital where they draw blood for you, but it’s only hospitals in there list.

Make sure that you arrange the blood test first thing in the morning and stop taking any vitamins etc before hand.

Check your vitamin levels as well, again some thyroid tests include those as well depending on what thyroid blood tests you pick.

On Thursdays they offer discounted rates for thyroid tests.

Dizziness and muscle stiffness/pain could be thyroid related as well as hair loss and cracking of your joints, or an autoimmune disease (Hashimoto’s) which I have.

If your GP will do a full thyroid test for you, make sure you get a copy of you results including the lab ranges then post them on here and the experts will help you.

From my experience GP’s don’t know enough about thyroid related illnesses and just focus on the TSH despite you feeling awful, your GP however, maybe different.

If your blood tests show thyroid related problems, the first thing you must do is make sure your iron, vitamin D, C, B12 levels are all good as this will not help your thyroid to work.

It may not be your thyroid, but, as nothing has shown up yet, it well could be an issue.

Best wishes

Peanut31

Curtis90 profile image
Curtis90 in reply toPeanut31

Thank you both so much, my next appointment with my GP is in 14 days. If those tests aren’t available through the NHS I will look to have them done privately. Please keep an eye out for my reply as I will be back.

Thanks again

Activity2004 profile image
Activity2004 in reply toCurtis90

Were you tested for low/high blood sugar, Curtis90 ? Some people have lows with their blood sugar when they get dizzy and don't eat when they're suppose to on time. Does diabetes and/or hypoglecemia run in the family?

Curtis90 profile image
Curtis90 in reply toActivity2004

Hey there, diabetes does but I was tested for this by my GP and had it ruled out. I like yourself thought it may be that at the very beginning!

Activity2004 profile image
Activity2004 in reply toCurtis90

Thank you!😀👍

pvanderaa profile image
pvanderaa

Get tested for heliobacter pylori abd vit B12 levels

Curtis90 profile image
Curtis90 in reply topvanderaa

thank you I shall mention h. pylori

Coeliacbunny profile image
Coeliacbunny

I don’t know, but a search against a couple of your symptoms brought up a list of possible causes: symptomchecker.webmd.com/mu...

arcr profile image
arcr

Hello Curtis, many years ago I returned from a similar trip with some of your symptoms. They did a spinal tap to rule out types of meningitis, etc. I believe that it compromised my immune system so as to bring about my autoimmune disease today. Perhaps you can ask your GP. Let us know how you come out...good luck.

Curtis90 profile image
Curtis90 in reply toarcr

Hi Arcr, thanks for the reply.

You believe the spinal tap brought about your autoimmune problems or the illness itself?

I shall bring this up with my GP

arcr profile image
arcr in reply toCurtis90

Not the tap itself but that if they did one on you they may be able to tell if have contracted a bacterial or viral illness causing your symptoms.

ShootingStars profile image
ShootingStars

I’d also check:

Cryptosporidium (it’s like Giardia) stool test (I had it possibly a long time. Always thought I just had IBS. Got treated, now I don’t. I went to several 3rd world countries but could have caught it any where. I did not have all the symptoms. I’m sure it contibuted to my health issues, as it’s a foreign invader).

TSH, FT3, FT4 tested all together

TPOa

TGab

Epstein Bar Virus (EBV)

Cytolomegalovirus (CMV)

Complete Blood Count panel

Comprehensive Metabolic Panel

Compliment Proteins - can indicate autoimmune activity

ESR/SEd Rate - inflam marker

Curtis90 profile image
Curtis90 in reply toShootingStars

I’m still waiting on my faeces results from my original appointment so they could still show something up. Thanks for this info, out of interest which countries did you visit? I was having the time of my life before this took me.. Thailand, Laos, Cambodia were all I managed to get through

ShootingStars profile image
ShootingStars in reply toCurtis90

You're welcome. I'm so sorry you've had to come home after your wonderful trip of a life time. I hope you find out what's the cause of your illness very soon. Is the fecal test for bacteria, fungi, and parasites? Cryptosporidium is everywhere, in every country. It's found in lakes, streams, rivers, and drinking water. It's one of the top causes of water borne disease in the UK and the US, Probably almost every other country, too. It can also be passed in un-clean produce, and on surfaces, if an infected person doesn't wash their hands after going to the toilet. I've been in lakes, streams and rivers do water recreation all of my life. The countries I've been to are Mexico, Jamaica, and Dominican Republic.

Curtis90 profile image
Curtis90 in reply toShootingStars

Thank you, I appreciate that. The faecal test was for culture and parasites. It actually had Cryptosporidium come back as negative (got the result this afternoon). I’m edging towards asking for fungal tests too?

ShootingStars profile image
ShootingStars in reply toCurtis90

You could, just to cancel out that possibly. Are I think getting the right blood results will lead you in the right direction. Your symptoms could very well be autoimmune or something else.

Curtis90 profile image
Curtis90 in reply toShootingStars

Yeah it’s just so hard in choosing which ones to ask for as they’re so many things it could be

ShootingStars profile image
ShootingStars in reply toCurtis90

I know what you mean. Where to start? Compliment Proteins are part of the Compliment System found in your Immune System. I got lucky and had someone test my C3 and C4. It showed C3 deficiency. I ended up having Hashimoto's. I recently re-tested both of those, plus C50, or total complement activity. My C3 is slightly lower and still deficient. My C4 is still in range and almost deficient. My C50 was in normal range. Strange, since that's supposed to gauge total compliment activity. Good thing someone didn't start with C50.

A complete thyroid panel, including antibodies should be ruled out. I just re-read your symptoms. You could have Graves Disease, too, so would want to test those antibodies. Palpations, hair loss, eye problems (are you eye protruding at all?), and your other symptoms could be Graves.

Curtis90 profile image
Curtis90 in reply toShootingStars

I wouldn’t say I have protruding eyes but like you say the symptoms sound all very similar other than that.

Such a shame I didn’t get the full thyroid panel first time round. It would have put so many options to bed

Curtis90 profile image
Curtis90

I now have my results for all the tests I listed. Things that stood out for me even though I obviously have no idea about this stuff is that my uric acid (0.42 mmol/L) and urea (7.3 mmol/L) seem to be on the high side of normal?

TSH reading was 2.9 mU/L

Vit B12 was 626 ng/L

Folate was 8.9 ug/L

Ferritin was 155 ug/L

Curtis90 profile image
Curtis90

Ok I will do. I’ve added an image to my post showing the TSH results. Thank you

Curtis90 profile image
Curtis90

Hi all

I have just received my results from medichecks and my TSH levels have risen again since my last test 2-3 weeks ago. Below are my full results, any info would be appreciated. Thank you

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE *4.28 mIU/L 0.27 - 4.20

FREE THYROXINE 19.8 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 105.0 nmol/L 59.00 - 154.00

FREE T3 4.33 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY 35.000 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES *93.5 IU/mL 0.00 - 34.00

Curtis90 profile image
Curtis90

I’m at a loss now. Confirmed I’m not celiac but I think deep down I knew that anyway. GP isn’t concerned by my latest thyroid results and I’ve no idea what could be causing my problems.

As a way of an update in regards to my symptoms. The dizziness/vertigo has improved as has the muscle and joint pain but it’s still very apparent and hard to deal with every day. Sinusitis and tinnitus remains and my hair still doesn’t seem to be growing too well.

My heart is still having palpitations randomly and I have a constant heavy pulse throughout my body 24/7.

I have to say that my symptoms definitely worsen the more I’m active and walk about etc. If I lay down everything seems milder.

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